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Sunday, June 12, 2022

Tuesday, July 17, 2018

From The Inside Looking Out - When FASD Is Hard To Explain -Living With FASD



I have recently begun following Beating Trauma With Elisabeth Corey  and love her many thought provoking posts and comments. If you are a victim of trauma. or parenting children with trauma, I urge you to check out her FB page. She works with adults, but her writings offer insight into why our children struggle in particular area's. As I have said before; FASD is a form of trauma due to both the prenatal exposure the child endured, and going through life with this particular form of brain damage is an open invitation for further trauma to occur.

When I feel frustrated with someone who obviously does not get Joseph's disability and through their interaction with him, are compounding the problem, I try to place myself in their shoes. What must the situation look like to them? Here is a child who's parents have obviously placed severe boundaries in his life, they also monitor his speech and actions,while insist on being by his side at all times. For all intents and purposes, the parents appear to be both coddling him while not allowing him to have a social life. When someone comes to me in what feels to me like a defensive manner, and begins questioning our parenting of Joseph, I am slowly learning that they won't be able to understand no matter how much I explain and I must remember that, "From the outside looking in, it is hard to understand."

The flip side is when you are on the inside looking out and you know if you could help people understand that you aren't being mean to your child, nor are you coddling him, you would have a great deal less stress. If only they could understand that you are merely providing the supports and boundaries he needs to both thrive and survive, and that if it were at all possible you would be only to happy to let up on them. I don't think you can explain how draining it is to keep a constant eye on your child, to think of the 101 things he could get into even though you have been super vigilant. Joseph has the uncanny ability to get into trouble or hurt himself, even when he is in line of vision. It is due in part to his lack of cause and effect, along with dysmaturity which means that while he is the size of a 10 year old, he is developmentally between the ages of 3-5. He is tall enough to reach the counter tops, the stove etc. but he can't be trusted not to turn on the stove or taste a mouthful of spices. 

How do you explain that while my son can speak fairly intelligently on certain subjects, he has no idea if a topic is appropriate, nor when it is time to discontinue the discussion. He will talk to you about any given subject for as long as you listen. The more you engage him, the more he talks and the bigger the fall out will be. How do you explain that interacting with my child causes him to become hyper vigilant without sounding like an over protective, paranoid parent? The brain power needed for each interaction, rapidly uses up the meager store he has on any given day. This means he won't have enough brain power to regulate his emotions, follow instructions, or even enjoy the remainder of his day. When he becomes over stimulated, his cortisol goes through the roof and he is unable to relax enough to sleep, resulting in still more tears. 

How do you explain the grief you feel when you see your child mourning his inability to interact with his peers? I often hear, "But ____________ is 10 and he can ___________, so why can't I?" He cannot understand that he has a disability, he only knows that others his age have privileges that are light years beyond what he can enjoy. 

And then there is the guilt that you have to work through in order to be the parent your child needs. 
You feel guilty for getting frustrated with his ceaseless chatter about nonsense. 
You feel guilty for resenting this disability that has turned life as you knew it on it's head and will continue to be foremost in any family decisions in the future. 
You feel guilty for getting frustrated with your child, because sometimes that stress presents itself in ways that make you wonder who you have become.
You feel guilty for insisting that your child have a small life even though it is in his best interest, because you know keeping his world small, means he is easier to care for.

All these reasons, plus a host of others make it incredibly difficult to explain what it is like to parent a child with FASD and from the inside looking out, it would make all the difference if only you could. 

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Tuesday, June 26, 2018

Sensory Overload - Living With FASD

I am the type of person who needs to personally understand something before I can fully comprehend how to work with the issue at hand. FASD used to, and still does if I am totally honest, cause me no end of frustration. I understood the diagnosis and understood how it affects people, but I could not personally relate and so had a hard time being empathetic. I used to pray, "God, please help me to understand." Ever hear the quote, "Be careful what you pray for, because it just might come true?" Well it happened for me. No, I didn't get FASD, as that isn't physically possible, instead I experienced antidepressant withdrawal, and suddenly I could intimately understand exactly what Joseph goes through on a daily basis. While the reason behind the distress is different, the symptoms are the same.

Joseph has always shut down when life became too stimulating. Again, I understood why, but at the same time I couldn't grasp what it is like for him. Now I can. 

I quickly begin to experience sensory overload. When you are driving down the road, your brain filters what you see and hear. If there is something new or different you will notice it, but the house's won't jump out at you as new information each time you drive past. Withdrawal has deleted that filter for me so everything hits me at once. The bright sun, the curve of the road, the hum of the tires, the birds singing, the bright flowers... they all pop out at once. Plus I need to maintain a certain speed, be aware of the vehicle's around me and remain alert for things like animal's crossing the road. All this input makes my brain tired and I stop comprehending the information that is entering my brain. I misread signs, misunderstand my children, and while I can follow my GPS, I cannot follow written directions. 

It can be especially bad when I go to the grocery store. There are bright lights, displays intended to catch one's attention, music, people talking and cash registers beeping. It overwhelms my brain. Then I am supposed to follow my list and make wise decisions concerning the things I buy. If I am by myself I can usually keep it together, but if I have a child along, I am usually the one who has a mini meltdown. 

The fatigue that comes from sensory over load is a horrible feeling, one I will avoid at all costs. I starts with my throat feeling sore, then my eyes hurt, my heart begins to race, my head ache's and my ability to process information goes down to about 25%. This sensation comes on without warning. I can be in mid conversation and suddenly the sick feeling hits and my brain shuts down. When that happens it is game over. There is no taking a few moments of down time so my brain can refocus as it takes at least one good nights rest before I feel better.

Now imagine if you were a child and mom was saying, "Get your shoes, make sure to get your tie shoes and grab a coat as well because it is going to be cold outside. When the child freezes or sits on the floor and begins crying inconsolably, it is so tempting to get frustrated. Now I can personally understand all that the poor child is dealing with. He is anxious because he knows mom has given a command and he is afraid he will get it wrong. He doesn't want to miss out on anything and it is just too much. I used to think that my children have to learn to do things for themselves or they will never learn. But for the child with processing disorder, FASD etc. do not use those moments to teach, wait until a time when he is calm and able to process information, those are teaching moments.

Our children do not want to be this way. Their brains are simply flooded by sensory overload and they cannot follow directions. When the brain is overloaded, things that you typically do automatically suddenly require intense concentration. Things like starting a vehicle, closing a coat, placing an online order, or scheduling an appointment take actual thought and brain power.

Sometimes when I ask Joseph a question, he gives me a blank look. I used to wonder how one could forget something in a few seconds. Folks it is entirely possible. Lets say I put my child's book away and a minute later he comes and asks for it. I reply that I haven't seen it and he says, "Mom, I just saw it in your hand!" He is sure to get the blank look from me, because I honestly cannot remember seeing the book.

Joseph struggles with finding the correct word for things, or he would suddenly forget what he was talking about and begin telling a different story mid sentence. Now I am the same way. I will be telling Dean something and suddenly my brain goes blank. I honestly have no clue what I was just talking about and it is so frustrating! 

This morning we stopped at the library and the siren's on a nearby pole were wailing. It took all my concentration to get out of my vehicle, lock the doors and walk into the building. It felt like that siren was inside my brain, using up all my mental energy. When I stepped inside the building and the noise diminished, I felt a physical feeling of relief sweep over me. Joseph was with me and was struggling as well and it hit me, "This is what he has to deal with every day!" For me, the intensity waxes and wanes as I go through each med drop and I have the hope that within a few years, my brain will have recovered, but for those with FASD, there is no such relief in sight. These people need our understanding, especially when they meltdown from sensory overload.


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Monday, June 18, 2018

When The Gap Between Chronological Age And Ability Continues To Widen - Living With FASD

Joseph is in another one of his frustrating phases, although if I am honest, I am not sure who is more frustrated, him or I.

Joseph has always had an amazingly creative mind, he can make tractors out of a twist tie, paper and Lego tires. He can turn dust bunnies into animals and play with them for hours. The problems begin when he wants to make "real things," but lacks the ability to understand why his idea's won't work. He is currently upset because he cannot make a computer out of a broken calculator. Once, in an attempt to keep his brain occupied, we bought the book How Things Work, by Neil Ardley. Our so called brilliant idea backfired though, because now, 2 years later, he wants to make the things he reads about in the book and his "projects" never turn out like he envisioned which results in a meltdown.

This morning he took his calculator apart and became upset when his computer didn't work like the one in his book. I tried explaining why his idea wasn't feasible in an attempt to help him understand. I know, I am a hard learner but I keep hoping that someday he will be able to understand. Here is our conversation:

"Joseph, you cannot make a computer out of a broken calculator."
"Yes, I can! The book says all you need is a wire and a battery"
"Yes, but you need the right kind of wire, and one that isn't broken. You cannot build a computer out of something that is broken."
"If you would give me something that you don't use but it still works, I could make something."
"You need the correct parts. Even dad (who in his mind can do anything) cannot take an engine apart and make a chainsaw out of it, because he wouldn't have all the exact parts he needs."
"Yes, but I have my calculator screen and that is like a computer screen n I have the buttons. All I need to do is hook a wire to the buttons and then they will make numbers on the screen."
I finally came to my senses and tried a different tactic. "If you want to build things, make them with wood or Lego's, boys who are ten can't use machine's and make electronic toys."
He sat there with the most crushed expression and I was once more aware of how much FASD has robbed him.

Lest you think I got my point across....he is currently making a solar panel out of the calculator. I am bracing myself for the meltdown that will come when he realizes his solar panel doesn't work.

This gap between his age and his abilities is continually growing. He see's other 10 year old's doing things and he wants to as well, not realizing he doesn't have the mental or physical capacity to perform the same activities. Letting him try and fail, doesn't work due to a lack of cause and effect. 

We tried different kits including electronic connectors and Lego kits but he cannot follow the directions. Helping him build something doesn't turn out so well either as he has his own idea's about how things should work and gets upset when you tell him differently.

Recently he has been recalling things Tristan did when he was 10 years old. Unfortunately, he has a surprisingly accurate memory in this area and deems it unfair when we do not allow him the same privileges and responsibilities. In light of that, we have really begun hammering the fact that age does not equal privilege, rather responsibility does. So when Tristan was dreaming of the day he can get his drivers license, Dean reminded him, and all his siblings who were listening in, that just because you are legally old enough to drive does not mean you will get a license. We have to trust that you will obey the rules, drive safe and make good choices, before we will take you for your license. The phrases, obey the rules and make good choices are ones our middle two children are well acquainted with. Our hope is that, if we continue drilling this concept maybe by the time they reach the age where their peers are getting more responsibilities, it won't come as quite a shock that mom and dad aren't suddenly going to give them the freedom they so greatly anticipate.

Thankfully, I know this phase will pass as they always do, but in the meantime we will batten down the hatches, wait for the storm to pass and hope the damages aren't too great, while hoping against hope that some of what we are attempting to teach sticks! 

I would love to hear how you help your child cope with the gap between his age and the privileges other children his age have.

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Wednesday, June 13, 2018

Walking The Walk Is Harder Than Talking The Talk - Living With FASD

Many people with FASD can, "Talk the talk, but cannot walk the walk." 

For instance, let's say I tell Joseph he may play in his play area, but he has to stay there. He will agree, even repeat the instructions back to me, but 5 minutes later, he is out in the shop. I ask him what I told him to do. 
"You said I may play in my play area." 
"What else did I tell you?" 
"You said I have to stay there."
"So why were you in the shop?"
"Lia wanted me to get her bike."

"Who do you obey, mom or Lia?"
"I must obey you."
We go over the rules about obeying mom, he agree's to them, apologizes and .... guess what happens? You guessed it, he is soon off on another deed of kindness. Once more we go over the rules, he says them back to me, only to repeat and repeat this scene in a myriad of ways multiple times a day.

Another rule we have is, when we are away from home, he is to play quietly. Otherwise he will interrupt people to offer bits of advice that aren't relevant to the conversation. Some people smile and nod their head at his comments, others engage him which only increases his chatter, which in turn increases his dysregulation, Before we visit someone we go over the rule's, he can relay them verbatim, using the exact word's and phrases we use, but without fail, he doesn't follow through.

When we go shopping, he is to hold onto the handle of the shopping cart. I remind him, he agree's and as soon as I turn my back, he walks off to look at something that caught his attention. "I just wanted to see what it said on the cereal box!" Is his excuse when I reprimand him. "What is the rule when we are shopping?"
"I have to hold onto the cart."
"Is that what you were doing?"
"No, but I just wanted to see...."


I tell him to sit on the sofa and read his new book and seconds later he is off the sofa, looking for Kiana's book because he overheard her ask me if I know where it is. 
"What did I tell you to do...."
"You told me to stay on the sofa but, I just wanted to help Kiana and now you are scolding me for helping!"
"It is kind to help people, but it is more important to obey mom." I remind him for the umpteenth time.

Joseph does a lot of talking as I shared in this post entitled: Incessant Talking - Yammering - Excessive Verbiage. When we are driving he tends to verbalize everything he see's, which in turn triggers a memory of something he heard or saw, which reminds him of something he once did. If we don't tell him to sit quietly, he will talk nonstop, something his siblings do not appreciate! We always listen to an audio book or music, because that helps keep his mind busy and he sits quietly so as not to miss out on the story. There are times however, when he simply cannot be quiet no matter how many times we remind him to stop talking. That is when we tell him to close his mouth, look out the window and tap his hands on his knee's. That usually works. The only thing I can figure out is that it is the addition of a physical activity to the command. Again, he can talk the talk, but walking the walk is so much more difficult.

This used to look like blatant disobedience and caused both him and us no end of grief. We gave consequences for disobedience and he felt wronged because he didn't feel he had done anything to warrant the consequences. Once we understood that in order for him to be moderately successful, we needed to provide structure and support, things went better. We no longer give him a box of toys and expect him to play appropriately without getting dysregulated by the toys with lights and noise, instead we give him something like Lego's or matchbox cars. He can have fun and doesn't become so overstimulated he is unable to follow the rules we have put in place.

If you are wondering why we have so many rules, there are many reasons, but basically it boils down to a safety issue. Joseph seems to be drawn to mischief and can get into trouble or hurt himself within moments. If I know where he is, I know he is in a safe place and he won't find things which he can turn into a dangerous object. I know that just because Joseph can tell me what he is supposed to do. But even though he knows the rules, that in no way means he will be able to follow through. 

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Thursday, June 7, 2018

Incessant Talking-Yammering-Excessive Verbiage - Living With FASD

 Incessant talking - yammering - excessive verbiage

If you have a child with FASD, chances are you are very familiar with these terms. Many individuals with FASD process information at a slower pace, some like Joseph, can process things better if they speak the words aloud. On Joseph's "limited cognition days" he tends to voice every thought and opinion that goes through his mind.

For instance, here is a conversation:
"Mom did you know it goes fast?
I do a quick brain search of my own trying to figure out what he could be talking about.

"The one that, umm, it went past the place where we live."
"I don't know what you are talking about Joseph."
"You know, when we were out on the grass it flew over top."
I ask questions, until I can figure out what he is trying to tell me. Sometimes I can get away with a nod of the head and an agreement, but other times he figures out that I am not following and tries to make me understand.

On days when his brain is working at maximum capacity, we have very few of these discussion's, when we over draw on his window of tolerance, they are nonstop. Usually after multiple conversation's I say, "Joseph, my ears are tired, no more talking." Thankfully he isn't offended, but typically within moments he will start, "Mom, did you..oh that's right I am supposed to be quiet." Not a minute later he will pipe up with another comment. I have found when this happens having him do about 20 jumping jacks every time he forgets, helps him remember. 

Today is one of those excessive talking days. To compound the problem, he reads/hears/see's things and interprets them incorrectly. He was looking at a Uline catalog, one of his favorite pass times and said, "Mom, did you know W@lmart and Uline are are trying to get the whole Amazon thing going again because the Amazon thing wasn't very good."  He showed me where he read this choice bit of information and that is not at all what the article said, but that was his take away, he won't forget it either. I just nodded my head and agreed rather than try to explain what the article really said because that would only lead to more question's, more words and more misunderstandings. And I wonder why my brain gets tired!

If anyone has tips to limit the over production of words on days when the brain has limited functioning, I would love to hear from you! Also appreciated would be tips to help siblings understand and thus be a bit more gracious. I often hear a sibling say in a desperate tone of voice , "Joseph, please stop talking!" 

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Friday, June 1, 2018

When The Window Of Tolerance Slams Shut - Living With FASD


In one of my support groups, a woman referred to something called, "The window of tolerance." An individual with FASD is easily overstimulated and when that happens, things go down hill. As long as you help them stay regulated, don't require more than they can do, and provide the necessary structure and supports, things go well.

We know that, we have known it for years, but there are always those times when despite your best planning, things happen and a fall out ensues. That happened to us this week. Dean and I had a service to attend, a service where emotions were sure to run high, and we didn't have a babysitter for Joseph. Since he regulate's off the people around him, we knew we were in for trouble because even though he was with us at all times and could regulate off of us, he would inevitably pick up on the heightened emotions around him. We decided to take him along, grit our teeth and deal with the fall out. 

We had a spectacular fall out. You would think after ten years we would be prepared, but somehow we are still surprised with the intensity of dysregulation. 

If the sun would have been shining yesterday things would have gone better, but it was dreary and Joseph's play area, which is little more than a glorified dirt pile, was muddy. He is currently trying to grow a garden of weeds and grass, but everything just dies. Keeping in mind that he pulls the plants up by the roots, shakes the dirt off, plunks them in a hole he dug and covers them with dead leaves and debris, it is little wonder things don't grow. But since it keeps him occupied, I won't complain. Anyway, he thought his garden is dying from lack of moisture, so he dug a ditch to funnel rain water to said garden. This project keeps him occupied for hours. He gets utterly filthy, but he is happy and safe.

Since his play area was off limits, he decided to ride bike. He rode a couple of half hearted loops around the drive, grumbling and complaining about the mud and everything else that displeased him. He thought he heard it thunder and said he wants to put his bike in the shop. I gave him permission, it is out of my sight and there are many things he could get into out there, thus the need for permission. He came inside growling and stomping because he is bored and doesn't know what to do. I gave a few suggestions which he promptly discarded, flopping on the sofa instead. A minute later he said, "I want to ride my bike!" I reminded him that I had given him permission to ride, he wasn't happy about it and then asked to put it away. "I don't care, I want my bike!" Now I could have left him go ride his bike, but I knew that in his current frame of mind, that would be asking for trouble. As it was, he was in the house where I could keep an eye on him. I left him yell and sob about his awful life and how mean I am because I won't let him ride his bike and was reminded again about the window of tolerance. We over drew big time the previous day and now we are paying for it.

His behavior was similar to that of an over tired toddler. He was grumpy and tearful about everything, nothing pleased him. What he needed was a good nap, but since he hates naps "cause they are for babies," he couldn't regroup. He couldn't obey, I say couldn't because his brain literally couldn't follow directions enough to to obey a command. When asked a question he couldn't answer it, but he had answers for any question directed at a sibling. He didn't respect his boundaries which are in place for his safety, so I had to tighten them which only made him more upset. He heard conversations not meant for his ears and drew conclusions, which caused further dysregulation.

Sadly, once the window of tolerance slams shut, it takes days, weeks and sometimes months, for the individual to be able to regain his previous level of tolerance. I feel bad for Joseph because while he feels all the "symptoms" he doesn't have the ability to understand what has happened. All he knows is suddenly his world is out of whack and his parents aren't letting him, "Do anything I want," as he puts it. He thinks we are just being mean, poor boy. 

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